Paediatric Diabetes
Frequently Asked Questions
Learn how (and why) information about Ontario children/youth living with diabetes (who receive care from a Paediatric Diabetes Education Program) is collected and stored in the BORN Registry.
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What is BORN Ontario?
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BORN Ontario, funded by the Ministry of Health, is the province’s prescribed registry that collects health information about fertility, pregnancy, birth, and child health from healthcare providers across the province since 2011. BORN uses this information to help healthcare providers make decisions, improve care, and create a better healthcare system for Ontarians. |
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What is the Paediatric Diabetes Network?
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Coordinated by the Provincial Council for Maternal and Child Health (PCMCH) since 2013, the Paediatric Diabetes Network includes 35 specialized Paediatric Diabetes
Education Programs located in hospitals and community health centres across the province. These programs have healthcare experts like nurses, dietitians, social workers, doctors, and diabetes specialists who work together to provide the best possible care to children and youth living with diabetes.
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What is BORN Ontario's role in the provincial Paediatric Diabetes Initiative?
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| The BORN Registry provides a system to collect and store information and share insights about children and youth living with diabetes in Ontario who receive care from a Paediatric Diabetes Education Program. Healthcare providers will use the information in the BORN Registry to track children’s health, improve care, and identify patterns to make diabetes management better for everyone. |
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Why do we need a registry in Ontario to collect paediatric diabetes information?
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| In general, health registries create a central organized system for information to support better decision-making. For example, BORN Ontario will track how, when, and where children/youth are being diagnosed with diabetes, and see if the medications and devices they use are helping them stay healthy. It will also help us understand if our programs and services are meeting the unique needs of children/youth and their families or caregivers, so we can make diabetes care better for everyone. Often registry information can be actioned faster than research to have a positive impact. |
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What kind of paediatric diabetes information is in the BORN Registry?
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The Registry includes information like when children/youth were diagnosed, the type of diabetes they have, what treatments or medications they use, and their blood sugar levels. It will also track things like the devices they use (like insulin pumps) and their overall health over time. For a comprehensive list of indicators, please see the BORN Data Dictionary. |
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Who is leading the Paediatric Diabetes Initiative?
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| This initiative is a joint collaboration between BORN Ontario and the Provincial Council for Maternal and Child Health (PCMCH). It was developed with help from people with diabetes lived experience, health system partners, researchers, and staff from Paediatric Diabetes Education Programs. |
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Is BORN’s paediatric diabetes data collection new?
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| Yes. Paediatric diabetes information is an addition to BORN Ontario's existing pregnancy and child health registry. The data collection began in January 2025 for some Paediatric Diabetes Education Programs. BORN Ontario has been authorized by Ontario’s Personal Health Information and Protection Act and its regulations to collect, use and share personal health information since 2011 to improve and facilitate health care. |
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Is my Diabetes Program participating?
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| All 35 Paediatric Diabetes Education Programs in Ontario will be contributing data to the BORN Registry by 2027. Ask your Diabetes Team for more information. |
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How will my/my child’s information be kept safe?
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| BORN Ontario is a prescribed registry, which means it follows strict policies to protect\information. It must meet high privacy and security standards and have policies
reviewed and approved by the Information and Privacy Commissioner of Ontario regularly. Only people who are authorized, like your care team and specially trained staff
at BORN may access the detailed personal health information. Otherwise, information is summarized to protect privacy and offer helpful information used to improve care or for research.
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How are patients and caregivers involved?
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Active participation of paediatric patients and their caregivers is important to the development and rollout of the paediatric diabetes initiative. Patient and caregiver perspectives significantly enhance the overall value and relevance of this initiative. We recognize the unique insights and perspectives these individuals bring to the table, and how these will be critical in ensuring the success and effectiveness of the registry expansion. Individuals with lived experience participate and provide input on our steering committee, data input and output working group, and data governance working group. Further participation of individuals with lived experience in the diabetes community, including perspectives from equity-deserving and Indigenous communities, is expected throughout the registry's development. |
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Where can I learn more?
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You can always ask your Diabetes Team for more information. You can also contact BORN Ontario
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Who are the members of the Executive Steering Committee?
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Achieving the goal of developing and rolling out the registry requires the input and direction of paediatric diabetes experts across the province. Guided by previous expert-led scoping work, the Paediatric Diabetes Executive Steering Committee is informing BORN and PCMCH on this important work.
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Who are the members of the Data Input and Output Working Group?
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Diabetes professionals are also lending their expertise via working groups focusing on targeted elements of registry development, including data collection and data reporting, technological solutions, and governance of the data.
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Who are the members of the Technology Working Group?
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Who are the members of the Data Governance Working Group?
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Who are the BORN Ontario and Provincial Council for Maternal and Child Health (PCMCH) members?
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*Please note, some members may not be reflected in these tables
BORN Ontario and the Provincial Council for Maternal and Child Health are funded by the Ministry of Health |
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